Invisible Women: Exposing Data Bias in a World Designed for Men

her urinary system. They all came back negative. So did her blood tests. And the more tests that came back negative, the more Rachael sensed a shift in how she was being treated. ‘I started feeling they weren’t believing me. That they thought it was all in my head.’ Eventually a consultant shook his head as Rachael told him how much she hurt and told her, ‘We have to send you home. There’s nothing wrong with you.’

But there was something wrong with her. Rachael was eventually diagnosed with endometriosis, a disease where womb tissue grows elsewhere in the body, causing extreme pain and sometimes infertility. It takes an average of eight years to diagnose in the UK,⁵⁶ an average of ten years to diagnose in the US,⁵⁷ and there is currently no cure. And although the disease is thought to affect one in ten women (176 million worldwide⁵⁸) it took until 2017 for England’s National Institute for Health and Care Excellence to release its first ever guidance to doctors for dealing with it. The main recommendation? ‘Listen to women.’⁵⁹

This may be easier said than done, because failing to listen to female expressions of pain runs deep, and it starts early. A 2016 study from the University of Sussex played a series of cries to parents (twenty-five fathers and twenty-seven mothers) of three-month-old babies. They found that although babies’ cries aren’t differentiated by sex (sex-based pitch differences don’t occur until puberty) lower cries were perceived as male and higher cries perceived as female. They also found that when male parents were told that a lower-pitched cry belonged to a boy, they rated the baby as in more discomfort than when the cry was labelled female.

Instead of believing women when they say they’re in pain, we tend to label them as mad. And who can blame us? Bitches be crazy, as Plato famously said. Women are hysterical (hystera is the Greek word for womb), crazy (if I had a pound for every time a man questioned my sanity in response to my saying anything vaguely feminist on Twitter I would be able to give up work for life), irrational and over emotional. The trope of the ‘crazy ex-girlfriend’ is so common it’s been satirised by Taylor Swift in her hit song ‘Blank Space’ and by Rachel Bloom in a whole Netflix series about a Crazy Ex-Girlfriend. Women are a ‘mystery’, explained renowned physicist Stephen Hawking,⁶⁰ while Freud, who got rich and famous off his diagnoses of female hysteria, explained in a 1933 lecture that ‘Throughout history, people have knocked their heads against the riddle of femininity.’⁶¹

The intransigence of this feminine riddle has not gone unpunished. Women who had often done little more than manifest behaviours that were out of feminine bounds (such as having a libido) were incarcerated for years in asylums. They were given hysterectomies and clitoridectomies. Women were locked up for having even mild post-natal depression: the grandmother of a friend of mine spent her life in an asylum after throwing a scourer at her mother-in-law. At least one US psychiatric textbook, still widely in use during the 1970s, recommended lobotomies for women in abusive relationships.⁶²

Of course, we’ve moved on from such inhumane treatment of women. We no longer lock women up and cut out parts of their brains. Instead, we give women drugs: women are two and a half times more likely to be on antidepressants than men.⁶³ This is not to condemn antidepressants: they can be life-changing for people with mental health problems. However, it’s still worth asking why women are so much more likely to be on them, because it’s not simply that women are more likely to seek help. A 2017 Swedish study in fact found that it was men who were more likely to report depression.⁶⁴ So why are more women being treated with antidepressants? Are women simply more ‘feeble-minded’? Does living in a world in which we don’t quite fit affect our mental health? Or are antidepressants the new (and obviously preferable) lobotomy for women dealing with trauma?

Freud once believed that hysteria might be linked to historic sexual abuse. He later retracted this theory as it would have implicated too many men to be, in his opinion, credible. But recent research suggests that abuse might be linked to certain types of pain women experience⁶⁵ – and in the wake of the #MeToo global scandal maybe it’s not so incredible after all.

The full answer to these questions is beyond the scope of this book. But one possible explanation for at least part of the disparity is that women are being prescribed antidepressants when they are not in fact depressed. Women’s physical pain is far more likely to be dismissed as ‘emotional’ or ‘psychosomatic’. The Swedish study which found that men are more likely to report depression also found that women who have not reported depression are twice as likely as men to be prescribed antidepressants. This chimes with studies from the 1980s and 90s which found that while men who reported pain tended to receive pain medication, women were more likely to receive sedatives or antidepressants.⁶⁶ A 2014 study which required healthcare providers to make treatment recommendations for hypothetical patients with lower back pain similarly found that female patients were significantly more likely to be prescribed antidepressants than men.⁶⁷

It seems that Yentl syndrome may be at play again here: it is striking that so many of the stories women tell of undiagnosed and untreated pain turn out to have physical causes that are either exclusively female diseases, or are more common in women than in men. Women are almost twice as likely to have irritable bowel syndrome as men⁶⁸ and three times more likely to experience migraines⁶⁹ (a condition about which we know very little despite it being chronic, often deeply debilitating and affecting 37 million Americans⁷⁰ and one in eight people in the UK⁷¹). In fact, many clinical pain conditions are substantially more prevalent in women than men,⁷² and several studies over the past